It's confirmed

marcuej · April 2012

I heard from the doctor at UCSD this evening and he confirmed that Hadley does have cystinosis.

I'm broken hearted for my sweet girl but thankful we finally know what's wrong with her. Now we can begin treatment and get her the care she needs.

This is all so surreal to me.

howleyshell · April 2012

I'm so sorry that you got the diagnosis but so relieved that you didn't have to wait any longer.

I have not doubt that this is very surreal.

Lean on your SAIF sisters. We're hear for you!

epphd · April 2012

First off, I'm sorry. I know that this is a huge amount to absorb. But I also suspect that the alternative would be even worse in a way because...what then? I'm glad that you know what little Miss H is facing - and that is such a huge part of it. You are all going to face this head on, kick ass and take cystinosis's name! And in the meantime - what an ambassador you will be. You didn't sign up for it, but you're going to be great regardless. All of you will be. HUGS.

alchris · April 2012

I'm so sorry -- how overwhelming. Still, I'm thankful that it's confirmed and that you can address it head on now. I did some reading earlier and I see that treatment can make SUCH a huge difference, and you've already tapped into such a perfect support system too. Go get 'em, and we're here for you! Tons of hugs, Mommy! Love to you!

preheatedoven · April 2012

((HUGS)) to you and your little girl. She has the best mama for the fight ahead.

BigHairQueen · April 2012

preheatedoven:
((HUGS)) to you and your little girl. She has the best mama for the fight ahead.

(((hugs))) to you and Hadley

crystalgirl · April 2012

(Crap, the bump ate my post. Argh...)

I'm glad that you finally have a definitive diagnosis and that it's something with a clear course of treatment. I'm sorry that it has to be something difficult, as it clearly will be very challenging. At least it seems that other children with this condition are able to live happy, full lives. But I know this will be so hard for everyone.

Please do lean on us whenever you want. We're here for you. Huge hugs, M!

JenCW · April 2012

Even with a final diagnosis - it has to be so much to actually come to terms with. You are an amazing mama, and you've already given Hadley so much to get her what she needs to deal with this condition. Continued T&Ps going out to you, her and the rest of your family as you begin the journey to get her treated!

KiKiGee · April 2012

I'm so very, very sorry that you're going through this.

I cant even imagine how surreal it must be, but it sounds like you have the right attitude... To get out there and get every bit of treatment for your girl as you can.

Lots of hugs as you tackle this

desabean · April 2012

I'm sorry it's been confirmed, but like the others have said...I'm relieved there is a clear course of treatment that appears to be very effective. But it still sucks that you all have to go through this. You are such a great advocate for H and she is so lucky to have you looking out for her. Ihooe she is feeling better soon.

togo · April 2012

I'm so sorry that you and your family are going through this difficult time. At least you have answers and you can get her the help she needs.

chocolatechip06 · April 2012

I'm sorry about the bad news, but hopefully now that you have a diagnosis you can start with the correct treatments and Hadley will be feeling better soon.

JillRock96 · April 2012

(((HUGS))). I am so sorry that you are faced with this, though I am relieved that you have a diagnosis at last. Thinking of you -- you know we are here for you!

flbeachcouple · April 2012

preheatedoven:
((HUGS)) to you and your little girl. She has the best mama for the fight ahead.

Hugs to everyone in your family. We are here for you.

dundasgirl · April 2012

You are a amazing mother. You have already shown that you will move mountains for your child. You didn't sit back and wait for snail mail when you could email and get what you needed. You have been so proactive in reaching out to other parents, and specialists. Hadley was given to you for a reason. You and your DH and Stella love her with all your hearts and that's all that matters.

For some reason I feel like it's more real now that it's official. Like others I am happy that there is a treatment even if it sounds like it's unpleasant to take.

Big hugs to you. We are here for you if you need to talk.

Mr.&MrsS · April 2012

howleyshell:

I'm so sorry that you got the diagnosis but so relieved that you didn't have to wait any longer.

I have not doubt that this is very surreal.

Lean on your SAIF sisters. We're hear for you!

I couldnt have said it better. So sorry you and Hadley have to deal with this.

JM1977 · April 2012

This must be so much to process. I am keeping sweet Hadley and all of you in my prayers.

krissyh21 · April 2012

I am sorry. This must be so hard. I hope Hadley gets stronger every day.

emmyloustu · April 2012

Big (((hugs))), mama. I remember exactly how I felt when Eliza's tethered cord/mild spina bifida was confirmed & that is nothing compared to what you are facing & it was the worst day of my life. I would have given anything to trade places with my girl & save her an ounce of pain. She has been stronger & more resilient than I ever could have imagined & I have no doubt it will be the same for Hadley.

You & DH were chosen to be her parents for a reason. It is evident you are going to be her biggest advocates & a voice for the cause. She is lucky beyond measure to have you.

Please let me know if there is anything I can do!

LVBlvd · April 2012

I am terribly sorry y'all are having to face this battle. I'm thankful that you have a diagnosis and can start treatment, though. Hang tough, momma.

vandelay · April 2012

I'm glad you finally got an answer, although I'm so sorry you are dealing with this condition. As you said, now you can go forward with treatment, which sounds very positive from what you've described. You guys continue to be in my thoughts and prayers.

nikisnow · April 2012

I am very sorry you have to go through this. Hopefully knowing what is wrong will ease your pain somewhat, as I'm sure the unknown was a very scary thing. I'm hoping that the treatment will help Hadley and that one day soon they find a cure. Stay strong and know that a lot of wonderful ladies are here for you.

Mouseygail · April 2012

Oh sweetie...I just read your blog post. I'm so sorry that you guys are all facing these challenges. It effin' blows. I hope that the medicine causes a big change in your sweet little hadley very soon! ((((HUGS))))

etoyama · April 2012

Big, giant ((((HUGS))))

LisaBRM · April 2012

Big hugs to you.....

jenn2929 · April 2012

I'm so sorry, but at least you know what you are facing now. I know you are going to be a great advocate to Hadley and a great fighter for a cure for Cystinosis. I hope that the treatment is easier on all of you than you might think it will be.

BIG ((Hugs))

SeaSoul · April 2012

I read your blog post early this AM while nursing. I'm so sorry. I'm glad you now know and can move forward with treatment. Hugs to all of you!

Melicakes · April 2012

So sorry to hear her diagnosis has been confirmed but so glad that there is treatment and even more glad she has you and your Dh and big sister to help her through these hard times

beebe929 · April 2012

JenCW:
Even with a final diagnosis - it has to be so much to actually come to terms with. You are an amazing mama, and you've already given Hadley so much to get her what she needs to deal with this condition. Continued T&Ps going out to you, her and the rest of your family as you begin the journey to get her treated!

well said!

*hugs* Mama!

brideinOC · April 2012

I'm sorry that Hadley, you, DH and your family have to go through this. Hadley is SO lucky to have such a great family and strong support network (including US!!). Keep your chin up, you have all of us to continue to help support you!

gringa78 · April 2012

JenCW:
Even with a final diagnosis - it has to be so much to actually come to terms with. You are an amazing mama, and you've already given Hadley so much to get her what she needs to deal with this condition. Continued T&Ps going out to you, her and the rest of your family as you begin the journey to get her treated!

This. ((HUGS))

t.bird · April 2012

i'm sorry

but i'm glad you actually KNOW & can get all of the help that you'll need!

sherryberry2 · April 2012

I am sorry that you got this diagnosis. However, it sounds like you have a great support system and fabulous resources to help get the best treatment for your little girl. Sounds like your daughter is lucky to have such attentive, dedicated, etc. parents and you are lucky to have such a sweet daughter. Continued thoughts and prayers for your family.

ladychicago · April 2012

Oh hon, I am sorry. Many prayers for strength, excellent medical care, uplifting support, and every resource you might need to care for your sweet girl. Hugs!

Mrs.Babbsy · April 2012

I'm sorry, I know this can't be easy, but now you know and can start taking steps to getting her the care she needs.

((HUGS))

Lean on us. We are here for you! Here or FB.

Soon2beMrs.Sivert · April 2012

I'm so sorry. Your family is in my prayers.

I'm glad that you were able to get answers so fast and have received excellent care. You are going to be an amazing advocate for cystinosis.

LadyGolfer523 · April 2012

((HUGS))

irishdo · April 2012

I am sorry. I am sure it was hard to hear even though it was somewhat expected.

You have done such a great job advocating for her thus far and that I know will only continue. It sounds like you have a great team in place already and can start to tackle this. Remember she is still your same awesome little girl she was yesterday...now you can just help her continue to grow!

schmoodle · April 2012

I'm so sorry for her diagnoiss but relieved that you can address the issues without any more confusion or questions about what is causing the concerns you've had. Keeping you all in my thoughts.